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Pheochromocytoma and Paraganglioma

What is Pheochromocytoma and Paraganglioma?

Pheochromocytoma is a catecholamine-secreting tumor that arises from chromaffin cells of the sympathetic nervous system. The term paraganglioma refers to any extra-adrenal or nonfunctional tumor of the paraganglion system, whereas functional tumors are referred to as extra-adrenal pheochromocytomas.

 

Pheochromocytoma is a catecholamine-secreting tumor that arises from chromaffin cells of the sympathetic nervous system. The term paraganglioma refers to any extra-adrenal or nonfunctional tumor of the paraganglion system, whereas functional tumors are referred to as extra-adrenal pheochromocytomas.
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10.0http://www.orpha.net
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SDHB mutated gene Created by PeMa
Last updated 18 Mar 2015, 02:34 PM

Posted by mariom
18 Mar 2015, 02:34 PM

Hi sarahp, I have the gene and have had the disease too, and two of my kids have the gene. You are in good hands at the NIH with Dr Pacak's team.

Posted by sarahp
3 Mar 2015, 03:46 AM

hello PeMa and wendie! are you still a part of this chat? i am newly diagnosed with SDHB . looking for others, being treated at NIH now after a radical nephrectomy about 8 mos ago. would love to talk to anyone else with this rare genetic thing!

Posted by Wendie
9 Jun 2011, 08:29 PM

I have this gene. My daughter, niece and brother all have the gene. I am the only one with the disease.

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Spreading the Word Created by Foxy
Last updated 1 Sep 2011, 12:54 PM

Posted by Foxy
1 Sep 2011, 12:54 PM

Yes frequent scans and testing is needed for SDHB. It has the potential to be an aggressive mutation, so it's better to be safe than sorry. The Troopers recently put out a newsletter that highlights SDHB. (If you haven't had a chance to look at it, you can find it here http://www.pheoparatroopers.org/newsletters/July%202011%20Newsletter.pdf) Take care and keep in touch!

Posted by mariom
1 Sep 2011, 12:38 PM

Thanks Foxy. We are SDHB positive (I'm never sure how to say that, I guess we just have the SDHB mutation) and I've had a carotid mass a few years ago, so we're very conscious of the need for frequent screening. The NIH guys (Karen Adams and Dr Pacak's team) obviously have access to the newest tests and therapies but most of all they are really keen and they see lots of patients with this mutation. In the UK the screening recommendation at the moment is not as frequent which can make a huge difference. Thank you, NIH. It's early days but hopefully we can spread best practice around the world.

Posted by Foxy
1 Sep 2011, 12:25 PM

Wonderful to hear from you! I'm so sorry that you and your family have to go through this, but glad to hear the you are getting the best care you can get. I've never been to the NIH, but I have heard only good from them. (I have many contacts within the NIH and the doctors there respond to emails faster than all the other hospitals that I communicate with.)

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Anybody Here Created by elizabeth3300
Last updated 3 Oct 2010, 06:47 AM

Posted by mariom
3 Oct 2010, 06:47 AM

Hi elizabeth3300 I'm not sure if anyone on here is an expert but I for one will share what I know if you like. Have you been diagnosed with the SDHB mutation? What would you like to discuss? :-) Fire away! Mario

Posted by elizabeth3300
2 Oct 2010, 10:00 PM

Hi everyone, I'm a new pheo patient. Would like to discuss this disease with anyone with info. This seems to run in my family and I'm just now finding this out. I've been all over the net looking for information. I found this site through the National Institute for Health.

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National Institute of Health Office of Rare Disease Research

Welcome to the Genetic and Rare Diseases Information Center (GARD), a collaborative effort of two agencies of the National Institutes of Health, The Office of Rare Diseases Research (ORDR) and the National Human Genome Research Institute (NHGRI) to help people find useful information about genetic conditions and rare diseases

03/20/2017

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Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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SDHB mutated gene

Created by PeMa | Last updated 18 Mar 2015, 02:34 PM

Spreading the Word

Created by Foxy | Last updated 1 Sep 2011, 12:54 PM

Anybody Here

Created by elizabeth3300 | Last updated 3 Oct 2010, 06:47 AM


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